You had life alteringly severe GI symptoms and they have improved. How?
February 18, 2024 3:46 PM   Subscribe

Over the last two years I've suffered a series of GI issues (details below as they're semi graphic) that mean that I am now significantly sick to my stomach pretty much all the time. I'm being seen by GI but my case is confusing and they are not making headway. I'd love to hear about others experiences with what has worked.

So. When I say GI distress, I don't mean heartburn or nausea (although both of those things are indeed lousy and I definitely have them.) At this point, I have diarrhea every day punctuated by periods of painful constipation, severe abdominal pain, bloating, and total lack of appetite. (In the last year, I've lost 15 pounds). It is often hard to get out of bed. It's hard to take care of my young kids. My partner does all the cooking, cleaning, etc. as well as a lot of hand holding when I'm feeling scared that this is never going end.

Known factors:
-I have an immune disorder that can effect the gut lining (CVID)
-Almost two years ago I had treatment resistant C Diff that ultimately was resolved with a Fecal Transplant.
-Following C Diff I contracted Cytomegalovirus which then became CMV colitis.
-Most recently after severe pain I had a colonoscopy/endoscopy that showed some inflammation and erosion. My GI kinda shrugged it off.
-I felt much worse after the colonoscopy and was eventually diagnosed with SIBO which is also proving to be treatment resistant.
-I've also been diagnosed with significant motility issues.

Whether or not your GI strife is identical to mine, if you were in a gut situation that was....BAD. Not just like...bad. How did you approach it? How do you get to a favorable resolution even if that wasn't a return to your previous normal? What do you wish you had done faster, differently? Any and all wisdom is so very welcome.
posted by jeszac to Health & Fitness (19 answers total) 6 users marked this as a favorite
Best answer: You don't mention if you've tried a FODMAP diet but if you haven't it's worth a shot. Monash University has an app that is helpful for tracking this stuff. I didn't have as miserable a time as you are having but after a severe bout of food poisoning a few years ago I developed IBS and used the FODMAP app to figure out what I could eat. My symptoms eventually resolved and I hope yours will too - it sounds truly awful! Regardless, the app helped me track and manage what made stuff better or worse.
posted by leslies at 3:50 PM on February 18 [4 favorites]

Best answer: My partner had many of these symptoms due to chronic ulcerative colitis. He kept trying different meds but was more or less in constant flare-up from when we met in 2021-early 2023, only kept in check by occasional bouts of steroids.

The life-changing thing for him has been tofacitinib (Xeljanz in the UK.) He started on a 10mg dose for a few months, then went down to 5. It has brought his digestion pretty much back to normal. He is still cautious about the UC trigger foods and about alcohol, but he is able to have them occasionally in moderation with no ill effects.

One milestone moment was when he had diarrhoea after a bad lunch, and recovered by the next day. Previously if he'd eaten one wrong thing his intestines would punish him for weeks or months. But now he's seen that he can have "normal" digestive issues and still return to a good baseline.

Having seen how anxious and distressed he was during the bad times, I wish you the very best of luck with this and hope you find a solution that works.
posted by Pallas Athena at 4:10 PM on February 18 [5 favorites]

Best answer: For me, step 1 was getting treated for a parasite. That left me with a lot of issues, so step 2 was working with my gp and gastroenterologist to find the right daily medication for me. Step 3 was working with a good dietitian and doing the full no-fodmap diet and reintroduction. Now I know my trigger foods, and I know that if things get really bad again, 3 weeks of eliminating all troublesome food will help.

I’m not perfect, I’m still on daily meds, but I know longer am in pain all day every day. I can eat some foods in moderation, but gave some up entirely. I miss them.

Feel free to memail me. It’s really tough!
posted by Valancy Rachel at 4:47 PM on February 18

Best answer: You know how docs can off-brand drugs, use them for another purpose than they were made for? After months of agony, my doc prescribed colestipol, a cholesterol drug that has a nifty side effect of knitting the stools together (as my doc put it). (I had already tried FODMAP with mixed results).

The difference was like night and day.
posted by intrepid_simpleton at 5:25 PM on February 18 [1 favorite]

Best answer: I also eliminated dairy and gluten from my diet, which helped me some. I can tell--my body can tell--when I slip up. So not worth it.

I have read cutting out sugar is also helpful, but I have not risen to that place yet.
posted by intrepid_simpleton at 5:30 PM on February 18

Best answer: I haven't had weight loss but I had similar issues to yourself. Switching to lactose free milk, avoiding onions and coffee, doubling my fiber intake, drinking the occasional glass of kefir, not eating after 8pm, reducing sugar intake and discovering I have a uterine fibroid and getting treated for that have had a huge impact for me.

Most of the changes were to deal with awful GERD, the fiber and sugar thing is an attempt to hold of DM2. Still working on the fibroid but the iron and vitamin C I'm taking has had an effect on my digestion in a positive way.

If you have a uterus, fibroids and endo can really mess your insides up so I would check everything is hunky dory with them too.
posted by fiercekitten at 6:03 PM on February 18 [2 favorites]

Best answer: I believe I had SIBO although I was never formally diagnosed. The symptoms fit perfectly. A low FODMAP diet started me feeling better within a few days. I kept to it very strictly for a long time, although they say you should start adding foods back in after awhile to see what are your particular triggers. I eventually did that, it just took me a while.

Now, about 8 years later, I am almost 100% symptom free. I can eat some but not all the things I eliminated - I can eat wheat, and higher fodmap fruits/veggies, except onions. Still no beans, legumes (except I can eat peanuts), or lactose. Overall these restrictions are not too burdensome and my digestive health is very good.
posted by mai at 6:20 PM on February 18

Best answer: My guess is that the intermittent constipation may preclude this, but I wonder if there's any possibility that it could be Bile Acid Malabsorption? I developed severe secondary BAM due to surgery about a year and a half ago, but it can arise due to a number of reasons, including SIBO. I manage it with a pretty high dose of a bile acid sequestrant medication (colesevelam) and by watching my fat intake (initially I could eat very little fat at all, but now I can eat a moderate amount).

Also, any chance you can find a different GI doc who might be less inclined to shrug things off? I'm so sorry you're going through this. If you do turn out to have BAM, feel free to message me. Sending you my sympathy -- I hope you find some answers soon!
posted by paper scissors sock at 6:40 PM on February 18

Best answer: Sorry, so as not to abuse the edit window: my understanding is that BAM is generally underdiagnosed (especially in the U.S.), hence my wondering if you could switch to a GI who might be more willing to be a partner with you in figuring this out.
posted by paper scissors sock at 6:44 PM on February 18

Best answer: Your health warrants more than a shrug, and I'm so sorry this is happening, jeszac.
- Can you see somebody else, if only for another opinion -- perhaps the doctor managing the CVID can recommend a CVID-informed gastro?
- You felt worse after the colonoscopy, got a SIBO diagnosis, and it's not responding to treatment; have you had a capsule endoscopy, for a better look at the small intestine?
- Significant motility issues can result in gallbladder issues.
posted by Iris Gambol at 6:52 PM on February 18

Best answer: Hi! For about a year, until June of 2022, I was nauseated all the time and could rarely eat. I lived like a person with the flu all the time, drinking ginger ale, eating jello, sucking on popsicles, enjoying the occasional yogurt. I lost 120 pounds in just under a year.

In June of 2022, I started getting light-headed, and when it progressed to having bouts of near fainting multiple times a day, my doctor sent me to the ER. At the hospital, they discovered I had low potassium, and I was in the hospital for about a week getting my potassium back up to normal and having lots of tests.

In the end, getting my potassium regulated put me on track to having mostly-normal digestion. It's been close on 20 months, and I not only eat more or less normally*, I also poop like a healthy person. This is amazing after a year or more of constant diarrhea with terrible urgency.

*I have been diagnosed with gastroparesis, which is slow emptying of the stomach. As a result, I tend to eat small snack/meals four or five times a day, and avoid foods that don't digest easily. I don't eat spicy things, I don't eat too much cheese at one time, I rarely eat chicken and almost never eat red meat. And I don't mind it at all, as it keeps me well.

I don't think we'll ever know what caused my lack of appetite, but psychological stress is a real possibility. I left my ex in October of 22 after 29 years together, with the help of an agency that support survivors of abuse and neglect. By the time my fainting spells took me to the ER, I was already apartment-hunting. I'm not sure how long just fixing my potassium might have helped if I weren't already exiting that situation.

I'm quite sure the low potassium was an effect, not a cause, of my stomach and intestine troubles. I certainly haven't had low potassium again since my hospital stay and exit from my relationship.
posted by Well I never at 7:20 PM on February 18

Best answer: Between last July and now I've lost 50 pounds and I was on the loo way more often than I should. Heck, even now I'm still that way, but at least I've gotten most of my appetite back. I think what happened to me was a combination of factors... a couple changes in gut biome + allergies + developing (but unrecognized) dairy allergy (related to change in gut biome) + accidental ingestion of mold (suspected).

Sometime last July or August I asked for some antibiotics from my family doctor for certain pain down there, and somehow, this time he managed to pick an antibiotic I was allergic to, instead of giving me the standard stuff. I broke out in hives and had to have prednisone to knock it back down, and that certain pain turned out to be unrelated. Gut biome completed gutted for nothing. Also during this time, I decided to start using my air fryer again, except... I must have not cleaned it properly and there may have been some mold in areas I couldn't see. I should have tossed the whole thing rather than just cleaning and sanitizing the basket. Anyway, all this also means I didn't recognize I can no longer tolerate dairy (I consume milk and cheese regularly back then) and assumed my upset stomach was due to the other stuff, rather than lactose intolerance.

It took a few months of experimentation and some Chinese OTC meds (to strengthen your liver!) for me to recognize my lactose intolerance. I stopped consuming dairy, and the symptom started to subside. The Chinese OTC meds seems to have helped my liver dump out whatever was causing the other problems. I think I'm about 80% recovered, and hopefully in the next month or so, I can get that final 20% done.

I would suggest you take detail notes of your daily food intake, at least the major groups, and work with your allergy specialist and dietician / nutritionist, on designing experiments that last a week if not two, where you try to cut out certain types of food and see if that would help you.
posted by kschang at 8:04 PM on February 18

Best answer: Stelara was the game changer for me, but it wasn't until I found my current gastroenterologist that Stelara was even mentioned. First, she was the only doc who said, "you're NOT in remission." Then she put me on Remicade and when that didn't work, she switched me to Stelara, and I am a normal person again. Maybe a slightly delicate stomach, but nothing out of the ordinary.
posted by janey47 at 8:58 PM on February 18 [2 favorites]

Best answer: If you’re still eating/drinking dairy, that might not be the root of the problem but it might still be contributing. The cells that produce the lactase enzyme are on the tips of the villi lining the small intestine, and are easily eroded away by inflammation and irritation of the tract, producing a temporary intolerance. They’ll grow back once the gut settles down. So it might help to settle things a bit to cut dairy out for a while, to switch to lactose-free versions, and/or to take lactase pills with dairy.
posted by telophase at 5:31 AM on February 19 [1 favorite]

Best answer: Has Crohn's disease been ruled out?
posted by AnyUsernameWillDo at 5:38 AM on February 19 [1 favorite]

Best answer: Adding to all of the above that if it is lactose intolerance, lactose is used as a binder in all kinds of prescription and OTC medications. If you need to take meds of any kind you may need to take them with several lactase enzyme tablets.

Best wishes to you, this sounds so rough.
posted by corey flood at 8:43 AM on February 19

Best answer: Have you been checked for Celiac's or gluten intolerance. Leaky gut issues may also be a culprit or part of the issue.
My wife developed gluten intolerance along with intolerance to dairy and corn after chemo years ago.
posted by mte.smiles at 9:22 AM on February 19

Best answer: Another recommendation to check for gluten or other food sensitivities. But especially gluten, because you may have Celiac disease, and if you do, eating gluten can cause serious long-term health problems. It's also an autoimmune disease, and I'm sure you know those often show up together.

There are tests for celiac disease, but even going off gluten for a few weeks will tell you a lot.
posted by lunasol at 2:44 PM on February 19

Best answer: If you have a gallbladder then it can be diseased even if they cannot detect any gallstones, they can test for this. Your symptoms sound like where my husband would have gotten if he didn't have his gallbladder out.
posted by meepmeow at 4:52 PM on February 20

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